Susan's Blog

Thursday, April 26, 2012

Fight for your children

When I was a little girl, I had gerbils for pets. Queen Victoria and Prince Albert. The times that the Queen gave birth were so exciting. It seemed like on every holiday, actually, there’d be a new litter: 5 naked pink gerblets, mashed together like  fingertips. But there was a danger: the weak ones could be eaten by the parents. “It’s nature,” Mom and Dad would say. “Ew!” Laura and I would say, fascinated. How could a mother eat her baby? Kill her baby? But sometimes, horribly, they do.

We always hear about the law of the jungle, and survival of the fittest, as if that is the way of all things. And in many ways nature is like that. And this provides some with justification for not helping the needy. Worse, this belief allows some to believe that the needy — the weak, the “damaged,” the non-normal — get what nature intends. What they deserve.

This is the most primitive of beliefs, since it comes from animals. But if you think about it, even animals themselves don’t always kill the vulnerable. There are stories of animal friendships, Mowgli-like tales where one species nurtures another, where wolves and dogs look out for humans, where gorillas adopt kittens. Mythical stories like Tarzan, and Androcles. It is not the way of the world, then, if there are memorable examples of other ways.

Every religion admonishes us to take care of each other, too. Why is it so easy, then, for us to forget? I just spent two days in Washington, DC with a ton of other disability advocates as well as CCCAID, the organization I’m working for as Director of Autism Adult Services and Outreach. I met with staff from six different Senators and Representatives offices, all to discuss the need to maintain supports, lifelines really, for people with disabilities.

I talked a lot about the ABLE Act, which is legislation that would allow for families to save money for their disabled children in adulthood, so that they would not lose benefits like Medicaid and SSI. Why shouldn’t we be able to save for our needy children when we save for the non-disabled ones? We take aid for college as well as pay our own money for it. How is it that different for our more vulnerable children to take aid from the government — because statistically they will have a harder time than their non-disabled peers earning nearly enough money to survive — to supplement their needs?

But what’s the “pay for?” I kept hearing this from the aides. “How do we pay for it?”

“We are one of the wealthiest countries on earth,” said Senator Tom Harkin of Iowa, at a reception I attended Tuesday night. And I say we are the lions of the world. We have a fantastic, rich and bountiful country; we have power, wisdom, and the best form of government on this earth. We can take care of our young, and the young of others, regardless of their struggle. We’re not gerbils. Let’s be more like the elephant and the sheep. The bunny and the guinea pig. Koko and the kitten.

But some parents are so scared for their children. They don’t know how to protect them from the world. A world with no certainties, and the threat of disappearing safety nets. In many places there are no safety nets at all. In D.C. this weekend, one mother told me that she knows parents who hope that their children die when they do. They love their children deeply, and yet they hope this.  These are not the parents who kill their children, who drown them or imprison them in a flaming house. These are parents who have no faith, no hope.  They do not want to see their children suffer, and they think that when they go, their children will indeed suffer.

They are sad parents, despairing about the world. And they are so wrong. They have no right to decide that, not about their living children. But they do have the right to be angry. They should be angry. Not at their children, nor God, but at the selfish people who would cut their lifeline funding.

There is always hope.  But hope does not come easily. Unfortunately, just as we have had to work so hard to nourish and nurture our disabled children, we have to work just as hard to help them live adult lives. We can’t turn from that responsibility. And we have to work together to keep our hope and possibilities alive. Life takes work. Hard work. We can’t give up.

We cannot allow our elected officials tell us that programs like Medicaid and ABLE will be eliminated or not enacted because of money. That is cowardice, not prudence. It is not even conservatism; this is not about being careful and watchful of funds. This is about letting people founder. Not helping our fellow man. If we are talking about not funding and helping with those who are more difficult to manage, then we are essentially talking about dispensing with them. Don’t believe what the Tea Party says, about how paying lower taxes somehow restores America to its greatness. The truth is less glamorous, but nevertheless, it is the truth, that lower taxes = less money for supports for the disabled = saying we don’t care.  It is cruelty.

The answer is clear, but very difficult. It is dreary and arduous. It is about one person at a time, one vote at a time, one phone call or email to Congress at a time. But we have to believe in the collective good, that there is power in that, but we all have to do our share.



I agree with your goals, but we would get there different ways. I have two sons on the spectrum , almost 20 and almost 22. One will never be independent, the other has potential for more independence. The reality is most likely he will need some sort of safety net through his life. There are no other siblings. Paul Ryan and the Tea Party don’t want to push people with autism off the cliff with the old woman in the wheel chair. What they are concerned about and what I am, is whether in 30 or 40 years there is going to be ANY safety net at all for those who truly need it such as people with disabilities. It won’t have disappeared because the mean and cruel-hearted Republicans have finally ripped it to pieces. It will be because our economy has collapsed under the weight of immense national debt. Take a look at what’s happening in Greece and in France. We are headed in their direction toward becoming a nation with the majority or at least large voting blocs being takers, not givers. The rich already are taxed. Something like 50 percent of people who theoretically could be tax payers pay no taxes at all. We need major tax reform where everyone pays something because when you have skin in the game, then you pay attention. Regardless of the tax system, I would support tax incentives that would promote in a new and radical way programs to support the disabled and the aged. I think the role the federal government should play is to foster private charities, not compete with them. I am tired of the demonization of “evil” corporations such as Big Oil. Anyone who has mutual funds in something like a 401-K fund, where do you think those funds are invested? I want the rich elites in places such as Hollywood and Congress to stop being hypocrites about the rich needing to pay more when they already are paying most of the taxes. The IRS will take a check from Warren Buffet or from George Clooney. They say they should pay more, but they don’t do it. Hypocrites in Congress such as Nancy Pelosi have made some pretty sweet investments that seem like insider trading. There are a lot of tax cheaters in Congress such as Charlie Rangel who say the rich need to pay and then scam the system. He barely got a slap on the hand , not even a real censure from Pelosi, for all his tax problems which basically we’re his attempt to avoid them. So I hope people will start thinking about how we can be a compassionate nation but in a realistic way with help going to those who truly need it. We need a better safety net for them. There are a lot of people in that safety net who don’t need to be there and they need to be helped out or at least made to take some personal responsibility to better their situation because the reality is most of them can. It might be hard , but they can. The ironic thing to me is conservatives are made out to be these cold, heartless people when the reality is they tend to believe in and honor human potential. They don’t want people trapped on the plantation that Democrats have created. People in these perceived voting bocs who go off the plantation so to say, they are demonized. If our economic system does collapse, our children are going to be fighting for scraps with a whole lot of other people such as the young man I checked ou who bought a bottle of Mountain Dew and a pack of gum with an EBT card (formerly known as food stamps). Tax payers are paying for his Mountain Dew and gum?? Our kids are not going to fare well in a society populated by people who think the government owes them their soda and candy and a whole lot more. In this election season, people have two look at both sides and see how things are working. It is too easy to blame it all on the rich not paying their fair share. The economy still is tanking despite massive government intervention. Check out how college graduates are faring. One in two can’t get a job in their field of study and something like 85 percent are moving back home to mom and dad upon graduation because of the economy. By the way, I think the Able Act does make sense. Only stupid government would say as it has said that you can’t save money for your disabled kids. You can, but let’s get rid of the shell game by reforming and simplifying the tax code with an eye toward encouraging people to be charitable. Jesus told his followers, not Rome, to “feed my sheep.” Our kids need a safety net, but the social programs they will need must be stabilized so they will be there, and the only way that is going to happen is by stabilizing the economy by reducing spending. No one can spend more than they have, and eventually we will run out of other people’s money. I enjoy your blog. But don’t demonize the Tea Party as safety net shredders.

— added by Julie Campbell on Saturday, April 28, 2012 at 7:17 am

Please excuse the typos in my previous post. I still haven’t mastered editing on my iPad. Conservatives aren’t mean and are not illiterate by definition!

— added by Julie Campbell on Saturday, April 28, 2012 at 7:28 am

Julie, thank you for writing so eloquently and clearly. It’s been a long time since I’ve had someone calmly explain the other side. I’m not being sarcastic.

I still disagree with everything you’ve said. For instance, the military spends way more than any other country in the world, and yet Paul Ryan’s budget offers them more than they’ve even asked for.

And just because the oil companies make money for those of us fortunate enough to have 401Ks, does that still mean they should have huge tax breaks?

Encouraging charitable donation, aka private sector over public programs, sounds like a noble belief in the human spirit, but it is historically proven not to work. If charity were the answer, then why did Roosevelt’s National Recovery Act get us so many jobs during the Depression, building our wonderful dams and bridges, whereas no private charity could help like that?

As for the guy with the Mountain Dew, well, that’s one guy with bad eating habits, not an entire system of abuse. Do you really have the courage to eliminate food stamps in the name of “widespread abuse?” Tea Party Republicans talk a lot about “waste in the government,” but how about then looking into waste in the Pentagon, rather than the poor and defenseless?

We are “collapsing under national debt” because the wealthiest people in this country do not pay their fair share. Tax cuts cause the debt.

Bottom line is, you do have the wealthiest paying less in taxes than the middle class, and so that is why defending that is selfish and wrong. Sure, George Clooney and Warren Buffet can pay more, and they should! But what will make the difference is fixing our tax laws so that *all* of the wealthiest pay their fair share.

— added by Susan Senator on Saturday, April 28, 2012 at 8:07 am

Susan, I am with you on this one, a thousand percent. Everyday, I see people who, without the government, would have no care at all. Is it their fault, they were born? Or is it their fault that they were once institutionalized, because in their day, that is what was done? I want for them what I would want for my own child, had she been born into that lives that they were, which she was not. We have 60, 70, 80 year old men and women with significant disabilities. Where would they be? When a man, who had lived with family, until they both died, came to us, without the government assistance he gets he would have nothing.
Charities assist, but we can and shouldn’t rely on them. And all of us live in this moment, not in some far away moment, where the debt is gone, and the world is a utopia. Where would the people of right now be?

— added by michele on Saturday, April 28, 2012 at 8:49 am

One of the reasons we spend more on the military than other nations is that we have been the military for a lot of nations. I wonder how those nations are going to fare when the United States no longer does that however it comes about. There are some bad players ou there the world needs protection from, and some bad stuff could be fermenting. Just my opinion. The United States hasn’t made the world dangerous, but the fact remains that it is dangerous. And under some of the folks causing danger, I wonder how disabled people fare. Worse than even here. I live in Fairfax County, Va, so next time you are in Washington, give me a call. I would love to sit down over coffee and hear how a thoughtful, intelligent liberal rectifies how people can work for the dignity of people such as the disabled, but then be “pro-chalice” when there really isn’t the option to choose anything except for being in favor of abortion. People who are against abortion are demonized by at least some on the left. Let’s be real, though. Most of the fetuses who are being aborted would fall into several categories such as potentially disabled or people of color. The left puts itself up as the champions of the down-trodden, but then anyone who dares question the morality of abortion is attacked as being anti-woman or against reproductive rights. I am pragmatic in that there always have been abortions, and there always will be and there should be a safe means to get that. But we as a society could and should put some limits on it. Maybe the ultrasound bill in Virginia was a bit much, but again isn’t there some irony in seeing a vaginal ultrasound as invasive but the abortion isn’t? From what I know, something’s being put into the vagina either way. There are people who don’t want women to know they are killing a baby, and unless you do it pretty early, it is hard to overlook that inconvenient truth. Then there’s the issue of health care. I had a dental anesthesiologist whom I considered taking my son to for treatment because he has to be knocked out for anything but a brief cleaning berate me for an hour over my politics during a meet and greet appointment. A big-time lib who told me basically that I am stupid and brainwashed by Fox News then had the audacity to charge me $150 for the appointment, which of course wasn’t reimbursable by my evil health care insurer. You see, this guy doesn’t even take insurance because he doesn’t have to, actually he doesn’t want to take less than what he thinks he is due. Undoubtedly, he does a lot of work pro-bono, but I kind of doubt it. People reading this probably are wondering what this has to do with autism and the disabled? I would argue everything! Don’t be some special interest group that either side can buy off. I think there needs to be a safety net for those who truly need it. We need politicians on both sides who are willing to grab the third rail, metaphorically speaking, and reform public entitlements, not to take them away from people but to make sure they continue to be there. Programs such as the Great Society were well-intentioned, but the poor aren’t better off, although one could argue that it is way better to be poor in the US than most places in the world. So Susan, if we ever meet for coffee, block out a chunk of time. I have a lot of ideas about how I would do things if I ruled the world and maybe I need a liberal’s views on how we get things done, together, not polarized, united in a common clause! I warn you that my autism genes make me talk in circles sometimes until I get to my point or wander down another path until I get back to my original point. A final plug before I go back to lurking. To be informed, at least, which ever side you are on, watch Bret Baier (spelling could be wrong!) on evil Fox News at 6 p.m. weeknights. Fair, balanced and unafraid. I challenge you to watch consistently and see if that isn’t the case. Another irony of life seems to be that lots of people live like conservatives, but they don’t vote that way. Go figure.

— added by Julie Campbell on Saturday, April 28, 2012 at 9:37 am

I know I said I’d go back to lurking. I would argue that we are in danger of actually loosing our humanity the more we put things in the realm of the government. How about getting someone to be the Andrew Carnegie of the 21st century in the area of the disabled. People who work in social bureaucracies might care, but I would argue the bureaucracy doesn’t care. There are a lot of stupid hoops you have to jump through that are just dumb. I just went through getting something resolved between two bureaucracies that should have been approved in a week being generous based upon verifications already done by one bureaucracy. Instead it took like six weeks and nothing else could move forward until this step occurred. Why is the answer now always more government? Why can’t there be out-of-box, visionary thinking that doesn’t look to government as primary?

— added by Julie Campbell on Saturday, April 28, 2012 at 10:06 am

Let’s have coffee. I think that would be fun and possibly we two would be able to come up with some mutually satisfactory solutions. I hear your frustration, I still do not agree with your stance, but I welcome your participation here anytime!

— added by Susan Senator on Saturday, April 28, 2012 at 10:49 am

Private charity just does not cut it in this instance. Our children deserve a guarantee of services as adults. What do you think our local school departments would be providing our children in the absence of a law that requires a free and appropriate education? Laws to protect and provide for our children are necessary. Thanks for the advocacy Susan.

— added by Vickie on Thursday, May 3, 2012 at 7:09 am